Been Taking a Break from Existing…

I have not been feeling so great… I am no longer even sure if I am relapsing or not! It’s just been a steady decline for the last couple of months if you ask me… I have felt not only fatigued but lethargic… the other day I felt like all my muscles at been worked out to the point of physical fatigue so even lifting my arm felt painful… sore… like my body lacked the physical energy to really move! I have been so dizzy and my vision (oscillopsia) has been crazy, I just don’t want to move or even keep my eyes open! I have been sleeping so much, the other day I pretty much slept all day which messed me up because that night I could not sleep! The next day I felt like garbage but was able to keep myself up so that come night I could sleep.

The night I was up though I also was in pain! I am not sure if it was MS or not but I had a really sharp pain shooting from my left wrist to my elbow, that was not helping me fall asleep! I went to bed at 9 but was up past 3! Now that I mention it, earlier that day I had a horrible lower back pain that was sending sharp pains shooting down my leg which I really thought was due to me sleeping weird but now I have to wonder… Anyways I finally got my sleep schedule back on track last night but still I just have no desire to even move! I just want to sit here and keep wondering “What the hell is happening to me?”

My doctor did want me to do a round of Solu-medrol (IV steroids) but I didn’t want to because Solu-medrol stopped doing anything for me a couple years ago. Plus that would mean my Dad having to get off work early so he could take me to my infusion AND I would have to make it through the heat to get there! I felt like it would do me more hard than good but because I also didn’t want to deal with the headache of trying to get Acthar sent to me I just asked for Prednisone, something I have not taken in years! He wrote me a prescription for MethylPREDNISolone, the name brand of Prednisone, but it was only a 21 pack of 4mg and I can’t remember what a typical dose was for me in the past but I know I have done a round of 1,000mg of Prednisone so I am pretty sure this is really low but… better than nothing I suppose. I mostly just plan of lying down and taking it easy for the next week or so, I don’t WANT to, I have so much I WANT to get done but I just can’t, I know trying to get stuff done right now will screw me up so I am trying to just not think about anything and try to relax a bit…

Oh, I am not sure if I have mentioned this on my blog but let me mention my plans for treatment. So I finished my first round of Lemtrada in September 2015 so my second round is in about 2 months. Then in December (2016) Ocralizumab (Ocrevus) which my doctor thinks I should do. After that, if I do not start seeing improvements, I think I will have to start working towards HCST (Hematopoietic stem cell transplantation) which I do not know enough about but sounded a bit scary, but again, I know nothing about this so I am not sure if that is a warranted feeling just yet… either way, it’s expensive, I have seen rough estimates of about $125,000! But risky or not, expensive or not, I can’t live like this. How much irreversible damage am I experiencing while not having my MS under control? That is how I feel, like I am doing nothing to stop my MS from running around crazy breaking stuff in the house while “Mommy and Daddy” are gone. I just want more than a few weeks of it “behaving”…

4 Responses to Been Taking a Break from Existing…

  1. Dimitri says:

    Even though you’re still feeling like crap it’s a good sign to hear that you’re still looking to the future and making plans on how you’re going to attack your ms (Ocrevus and HSCT).

    Yeah, Ocrevus sounds like it’s going to revolutionize ms treatment. I hope this one works out for you. As for HSCT, I’ve read various price ranges. All of them are expensive; $45K to $125K, but I recently learned (I think) that HSCT is in the phase 3 stage all around the world. Even though phase 3 stages are 10 years long they were started in 2008. That means that in 2018 the results will be in and hopefully HSCT will be an approved therapy for ms. If it is the price should fall significantly. And remember, the science is only getting better.

  2. Liz R says:

    Hi Matt!

    I can’t even begin to imagine the pain and frustration you experience. The honesty behind your blog paints a picture of the challenges of living with MS, and is truly inspiring. Your honesty in your posts shows other people with MS that they are not alone in their daily challenges. I have learned so much about MS from reading your blog and just want to say thank you for all of the hard work that goes into this blog!

    -Liz

    • Matt Allen G says:

      If I did not have the ability to read other people’s experiences with MS, their struggles, and their honesty? I don’t know where I would be so I am just paying it forward really

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